Fair Shares and Sharing Fairly: A Survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking.

PLoS One 2015 8;10(7):e0129893. Epub 2015 Jul 8.

Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada; School of Public Health, University of Montreal, Montreal, Quebec, Canada.

Context: Biobanks are important resources which enable large-scale genomic research with human samples and data, raising significant ethical concerns about how participants' information is managed and shared. Three previous studies of the Canadian public's opinion about these topics have been conducted. Building on those results, an online survey representing the first study of public perceptions about biobanking spanning all Canadian provinces was conducted. Specifically, this study examined qualitative views about biobank objectives, governance structure, control and ownership of samples and data, benefit sharing, consent practices and data sharing norms, as well as additional questions and ethical concerns expressed by the public.

Results: Over half the respondents preferred to give a one-time general consent for the future sharing of their samples among researchers. Most expressed willingness for their data to be shared with the international scientific community rather than used by one or more Canadian institutions. Whereas more respondents indicated a preference for one-time general consent than any other model of consent, they constituted less than half of the total responses, revealing a lack of consensus among survey respondents regarding this question. Respondents identified biobank objectives, governance structure and accountability as the most important information to provide participants. Respondents' concerns about biobanking generally centred around the control and ownership of biological samples and data, especially with respect to potential misuse by insurers, the government and other third parties. Although almost half the respondents suggested that these should be managed by the researchers' institutions, results indicate that the public is interested in being well-informed about these projects and suggest the importance of increased involvement from participants. In conclusion, the study discusses the viability of several proposed models for informed consent, including e-governance, independent trustees and the use of exclusion clauses, in the context of these new findings about the views of the Canadian public.

Download full-text PDF

Source
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0129893PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4495996PMC
April 2016
40 Reads

Publication Analysis

Top Keywords

samples data
12
general consent
8
biobank objectives
8
ethical concerns
8
one-time general
8
informed consent
8
half respondents
8
objectives governance
8
control ownership
8
governance structure
8
consent
6
data
5
respondents
5
community canadian
4
scientific community
4
preference one-time
4
institutions respondents
4
respondents indicated
4
indicated preference
4
canadian institutions
4

References

(Supplied by CrossRef)
Genebanks: a comparison of eight proposed international genetic databases
MA Austin et al.
Community Genet 2003
Biobanks, consent and claims of consensus
Z Master et al.
Nature Methods 2012
Data sharing, biobanks and informed consent: a research paradox?
C Allen et al.
McGill J L Health 2013
Ethics and biobanks
MG Hansson et al.
Br J Cancer 2009
The social and ethical issues of post-genomic human biobanks
A Cambon-Thomsen et al.
Nat Rev Genet 2004
The Nuremberg Code
Trials of war criminals before the Nuremberg Military Tribunals under Control Council law No. 10 1949
Universal Declaration on the Human Genome and Human Rights
1997

Similar Publications